Osteogenesis imperfecta drive at state's Capitol(1)

By Alfredo Santana

Bill Scarberry moved and rolled with his electric wheelchair across the front green lawn at the state’s Capitol in Sacramento to greet participants at the Third Annual Unbreakable Spirit Walk for Osteogeneis Imperfecta (OI), and to instruct them to keep spreading the word about the little known condition, which makes bones brittle on people diagnosed with it.

Scarberry, organizer of the OI walk, said despite the fact OI has been known to affect humans for many decades, close to nothing is reported by the media to create awareness about a condition that 50,000 people in the United States live with every day.

“We are here to talk about the event, the OI Foundation, and the need for media coverage. This event is a good start to improve things about OI,” said Scarberry, who is married to Anastasia Scarberry, and has two daughters. “We need you to be here as friends, as part of support networks, as family with members with OI, etc. This is a good way to spread out the word about OI and the event.”

The OI awareness walk took place on Saturday, Sept. 25, from 11 a.m. to 2 p.m. in the lawns of the state’s Capitol, the center of California's legislative action. Its purpose was to raise funds for the foundation, to serve as a network point for people whose relatives live with OI, for friends and family members who have one, or two relatives with OI, and to launch a message to California’s elected officials about the need for funding research, educational, and social programs that improve the quality of life of people with this disease.

About 200 people, among them about 15 adults, children and toddlers with OI, gathered at the west steps of the Capitol, and walked around the Capitol Park. The Walk-and Roll event was a symbolic gesture to honor those who have been lost to the condition, and to keep the spirit alive that support from the state’s government agencies, and from individual donations are crucial to better understand OI, and people diagnosed with it.

Youth wearing T-shirts with phrases that read “We are walking for our future,” and “Support OI Foundation,” also joined the event, which included a musical performance from the band Jukebox. The three-member guitar and bass band played old rockabilly tunes at a makeshift tent in the steps of the Capitol from 10 a.m. until the event was over.

Osteogenesis imperfecta is a genetic disorder that causes bones to break easily. Each time someone breaks a bone, the healing and rehabilitation process becomes lengthy, and difficult. A syndrome of painful fractures that often need surgery develops, as they force individuals away from school and work. These condition isolates them from friends and peers. Families with OI members often spend tens of thousands of dollars battling the complications of OI.

People diagnosed with OI have a faulty gene that instructs their bodies to make little, or poor quality-type 1 collagen, the protein that gives strength and helps structure the human bones. About one-third of children born with OI each year come from families whose history do not include cases with the condition.

How the so called “brittle bone” disease impacts individuals varies individually. Some suffer only several fractures in their lives. However, others can suffer hundreds of fractures before they reach adulthood, and develop weak, shorter limbs, and abnormal ribs cage. Many among these cases must wear special support orthopedic devices must be continuously.

Other medical complications, such as difficulty to breath tend to develop. Also, social barriers must be challenged in the refusal to receive health and medical attention from hospitals, in addition to inadequate architectural buildings that make access to them nothing but almost impossible.